Posts tagged SMA

Families of SMA Fundraiser

Afternoon readers.

I just wanted to take a minute to remind you about our fundraiser.

Today is the last day to reserve your very own “Victory for Violet” T-shirt. So hurry over and order! 100% of the proceeds go to Families of SMA.

If you don’t want a T-shirt and just want to drop a buck in the bucket you can do that too …. right here!

Those of you located in Western Mass there is still the Poker Run on Saturday that you are welcome and encouraged to attend.

Please take a minute to share a dollar. Those who benefit from the research will appreciate it greatly.

In case you forgot or need a reminder here is Violet’s story.

Let’s try and help change another mama’s story, or support a family in need.

Thank you times 100.

Gwen

Violet’s Story

Today we are going to hear Violet’s story. This is how the drive for the Victory for Violet fundraisers was born. Be prepared with a spare tissue just in case. 

Violet’s story as told by her strong mama; 

Finding out that I was pregnant with Violet was a surprise. We were not planning for another child, as our first daughter together was just a year old, and my husband has a daughter who was 12 years old at the time. None the less we were extremely happy! Violet was due to arrive the day before Halloween, 2010. My water broke almost a week early and Violet joined us via C-section on October 24, 2011 at 4:03pm. She was a healthy 8lbs 9oz and 20 inches long. She looked just like her big sister Ember. We took her home 3 days later. 

From the moment we arrived home, Violet cried. She cried all day and night. She went to her pediatricians’ office several times, and they said she had colic, changing her formula a couple times. At one of these visits a pediatrician told us to “put on Mozart and turn down the lights.” Still nothing seemed to help. On November 19th, my husband brought her back to the doctors hoping for some answers. 

The doctor who saw Violet this visit was pleased with her weight gain, up to 10lbs 3oz, and once again changed her formula continuing to say it was just colic. As my husband was leaving the office, the doctor noticed as he put Violets coat on that her arm fell limp. The Dr then asked if Violet was always this limp. Truth be told we were so tired we hadn’t noticed she was weak until the doctor mentioned it. My husband then called and asked me if I had noticed her weakness. I had noticed the previous night that her cry seemed very weak, but I figured that was because she had to be so exhausted from crying. The doctor decided that Violet needed blood work, and scheduled an appointment for that afternoon with a Neurologist. 

Violets blood work was normal. So, I thought that everything was going to be ok. Then my husband took Violet to the Neurologists appointment. He sent me a text message not even 15 minutes into the appointment telling me they were going to admit her to the hospital. 

At that very moment my heart sank and I knew, I just knew, it wasn’t good. 

I was home with my 23 mo, as we both had fevers. I held out hope that this was just a virus. The hospital would not let me visit her because I had a fever, so I stayed home feeling very helpless. The Neurologist called me to explain she had an idea of what condition Violet had; she said it was either Guillain Barre Syndrome, Botulism, or a genetic disorder. I asked her what the outcome would be, and she said none of them would be good. A specialist preformed an EMG test and about 2 hours later my husband called and said they wanted me there right away. 


I arrived at the hospital to get the news that Violet was diagnosed with Spinal Muscular Atrophy, Type 1. Basically they told us she had 6 to 12 months to live; there is no cure, no treatment. They went over the options, ventilator, bi-pap, G tube, all of this was foreign to us. No matter what we decided to do she would not survive. 

We decided immediately that we would not be doing anything invasive. We asked for Hospice, and wanted to take Violet home as soon as possible, yet she had to stay overnight for observation. No one we knew had even heard of this disorder. I did as much research as I could that night while in the hospital. Nothing I read was good. 

We left the hospital on Saturday morning feeling confused, lost, scared, and sad. We knew what the end result would be. But what would the journey be like for Violet, and us? What would we tell big sister Ember?

Then we met the most wonderful person, Violets hospice nurse, Jen. 

From our first meeting I knew we were in great hands. Jen never had a patient with SMA, but she did have lots of experience with kids. I also looked at information the nurses gave me at the hospital and decided to place a call to Families of SMA, the Massachusetts chapter. I received a call back from another mom who had lost her son to SMA in 2002. Laurie became a great support and source of information for us. I learned more from her than what any doctor had told us. 

In the days to follow we received oxygen, a suction machine, morphine, and a lot of information. Violet was still holding her own, but we would need these things in time. We now definitely noticed just how weak Violet really was. She had basically no muscle in any of her extremities, and what we couldn’t see was that she didn’t have any muscle inside. 

Violet would breathe from her belly, never her chest, and she worked hard for those breaths. She could hold your finger if you put it in her hand, but never lifted her arms or legs. The hardest part was that, she always cried. I was the only one she would let hold her. She was beginning to smile and laugh, which were bittersweet. Violet continued to smile until the day before she passed.

We skipped Thanksgiving, being newly diagnosed; it was too hard to face many people. The first week of December came, and Violets crying seemed to increase, and I really believed she had reflux. Jen, our nurse got Violet prescribed Zantac, and that seemed to help somewhat. We also changed her to a different formula. I learned more about the different nutritional needs of SMA children, from another SMA mom, Liz. 

Even with the formula and the reflux medicine Violet was still not happy. One night, out of desperation I googled SMA and reflux. I found an article about motility issues in SMA children and some medications that might be needed. My nurse got us a medication to help with that. Then finally Violet was happy! 


Laurie put me in contact with another mom, with a son, Coby, a month older than Violet who was diagnosed with SMA Type 1 also. Lori, Cobys mom and I became friends fast. We have a lot in common, and we have been support for each other in so many ways. Coby, you see, is Violets boyfriend, and we know that they are together in heaven.


We decided to have a big family Christmas. Since this was going to be Violets only Christmas, we wanted her to celebrate, even though she was only 2 mo. We had about 15 people coming over on Christmas Eve, and Violet decided that she was not going to have a good day. She began crying, and when Violet cried she turned blue from lack of oxygen. Christmas Eve was the very first time we had to give her morphine. It was one of the hardest things I had to do in my life. Thank goodness my husband was stronger than I and knew it was best. She was then comfortable, and slept peacefully, probably for the first time ever. 


After Christmas, Morphine became just another daily staple in Violets life. Our mission was to keep her pain free, and comfortable. As the new year came, we knew Violet was having trouble swallowing, so, on New Years Day, Jen placed a NG tube so we could continue to feed Violet. We also began using another medication, to help with her comfort. We got used to feeding with the NG tube, but could tell Violet was getting weaker. 

On January 24, 2011, at exactly 3 months old Violet passed away peacefully in my arms. 


My husband and I believe that we did the best thing for our daughter. We believe we kept her comfortable and pain free, until it was her time to leave this Earth. I do not have any regrets in keeping her home, and taking care of her. I truly feel blessed to have had such a wonderful Hospice nurse, and now friend in Jen. The people I have met in the SMA community are amazing. Someone said to me that the SMA family “is the nicest group of people you wish you never had to meet”, and that is the best way to describe it. I know my angel is watching over me, and her big sister Ember whom she just adored. 

Ember has told me she has Violet “in her hands”, and that Violet is “a happy girl now”. I think maybe Violet is a lot closer than we think.

So much emotion, and struggle. As parents we have to make tough decisions every day for our families. 

I am asking you now, to make another decision. The decision to help, so that maybe this won’t have to be another mom’s story. Give. Just a dollar or two. Or buy a T-shirt to show your support. 

If neither of those options fit you, use the buttons on the bottom of this post and share. Then it might find someone who is able. Sharing is caring!!!

Gwen

What is SMA?

To be honest three years ago I had no clue what SMA was, or why I should care.

Then from afar, I watched a mother loose a battle, and choose to begin a new one. SMA took her baby from her arms early, but left behind a drive to educate, encourage, and help others. 
This year I have decided to partner up and help with her annual fundraiser. But first let me answer the question of what SMA is.
My own research has helped me to understand that SMA actually represents a group of diseases that effect the motor neurons specifically in the spinal cord and brain stem. Muscles that are controlled by motor neurons are used for things like breathing, crawling, walking, head and neck control, and swallowing. Pretty important stuff. Muscles will become smaller (atrophy), without proper activity from motor neurons.

I have found varying information on how often this occurs, but the number of one-in-6,000 to one-in-20,000 individuals are effected world wide. Infants, children, and adults are effected by this disease. Research has been able to determine that individuals effected receive one gene from their mother and another from their father. If both mother and father have the gene there is a 25% chance one of their children will inherit the disease. Between one-in-40 and one-in-80 men and women carry the gene.

“The scary part is SMA kills more babies than any other genetic disease.” Fight SMA Website

So why am I talking about it and what am I asking you to do today?

Give a little (or a lot) with me in support for Families of SMA. From their website;

Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:– Funding and advancing a comprehensive research program;
– Supporting SMA families through networking, information and services;
– Improving care for all SMA patients;
– Educating health professionals and the public about SMA;
– Enlisting government support for SMA;
– Embracing all touched by SMA in a caring community.

Ways YOU can participate.

Donate a dollar or two here.  Really just a buck adds up. If each one of you donated just a dollar our goal would be met before the end of the week. One candy bar, one 20 oz soda, one coffee at Starbucks, just one  George Washington …. or two or three, but start with just one.

If you want to get when you give you can buy one of our Victory for Violet T-shirts here.

This is what they will look like. Just $17.35 after shipping, and it will come directly to you! They are also in ladies shirts, I figured that would be best as it is a quite feminine design. 100% of the proceeds will go to this fundraiser, and be combined with our other donations. They will not print any of the shirts until we hit our goal of 20, just an FYI. If we do not sell 20 shirts no one looses anything. If we do, then we raised more for FSMA, win win.

Or you can always attend the live in person fundraiser event;

August 3rd in Southwick MA they will be hosting a Fundraiser Poker Run. If you are near enough by I encourage you to join in the fun.

Please take the time and offer your support however you see fit. We will keep our fundraiser open until August 3rd after that time you can still show your support and donations directly thru the FSMA website
If you don’t have any dollars to spare please consider sharing this post (the buttons at the bottom make it easy).
Gwen
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